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But the pathetic part is that they don't realize what they have "discovered".
FPIES and its triggers (most commonly cow's milk, rice, and soy) can be difficult to diagnose, lead researcher Tara Federly, MD, a fellow at the Children's Mercy Hospital and the University of Missouri in Kansas City, told Medscape Medical News.
FPIES is not mediated by immunoglobulin (Ig)E, "so it's not the immediate hypersensitivity reaction that you see with peanut or milk or other allergy," Dr. Federly explained. "The exact mechanism is not known, but it's basically an inflammation of the GI tract that is triggered by certain foods. The interesting thing is that it happens hours after ingestion, instead of being a more immediate IgE-mediated reaction," she said.
FPIES stands for Food Protein-Induced Enterocolitis Syndrome. I find it a sad reflection on their competence that they can't seem to figure out that it's an IgA reaction, and a way to diagnose it has existed for over 10 years (EnteroLab tests).
"The important thing is that allergy testing doesn't help identify FPIES because it's not an allergy; it's something else, but we don't quite know what it is. It is important to be aware that this syndrome exists and that unusual foods not usually linked to food allergy can be associated with it," he said.
They seem to be so close to understanding it, and yet they're still lost.
To make it doubly sad, they've apparently also discovered a form of microscopic colitis, and they don't realize that, either. They seem to be a well-regimented bunch of medical researchers, totally incapable of thinking out of the box.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
A well-known pediatric allergist in DC who I've met has in his professional profile work with T-cells in allergies. He mentioned he was working on IgA-mediated. Is that the same thing?? I may take my daughter to see him, even though she tested positive for IgE (and continues to have no obvious reactions, just D). I may become a patient too if I like what I see (i.e. out of the box thinking)
David Jeong, MD
Dr. Jeong is board certified in allergy and immunology. He completed his allergy and immunology training at the University of Washington and Seattle Children's Hospital in Seattle, WA. He cared for both adults and children during his training, treating a wide spectrum of allergic diseases and clinical immunodeficiencies. He also conducted basic research focusing on the role of T-cells in food and environmental allergies. His research resulted in multiple presentations at national and international meetings.
He is board certified in pediatrics. He completed his internship and residency in pediatrics at the University of Michigan C.S. Mott Children's Hospital in 2008. He completed medical school at the University of Iowa in 2005 and his undergraduate degree at Northwestern University.
Dr. Jeong is a member of the American Academy of Allergy, Asthma, and Immunology, the American College of Allergy, Asthma, and Immunology, the European Academy of Allergy and Clinical Immunology, and the American Academy of Pediatrics. His clinical interests include food allergy, atopic dermatitis, asthma, rhinitis, urticaria, and immunodeficiencies.
Zizzle wrote:work with T-cells in allergies. He mentioned he was working on IgA-mediated.
Yes, that's basically what's happening, except that it's not an allergy if it doesn't create an IgE response. He needs to enlighten those researchers at the University of Missouri in Kansas City, who made the presentation at the annual meeting.
It sounds as though he might be helpful for your daughter, because he certainly should have a better understanding of what's actually going on than most of his colleagues. I would think that he should be able to offer some insight into your situation, too, if you can convince him that you're under 18.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
And I just learned some of this from Tex's book. Tex....I loved the chapter on the difference between gluten sensitivity versus gluten allergy. I have a much better understanding of it. I just loved your book but really need to go back and read it over. Mast Cells and leaky gut still are hard to grasp for me. When I have time, I will look over all the resources you have listed in your book. You did a great job! Thanks so much!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
So is FPIES like what we experience? I want to print this and take to my GI appointment on Wednesday. I don't think she believes the inflammation is food related even though she did believe me about gluten at one time........
I should also send it to the father and son allergists I saw.
DISCLAIMER: I am not a doctor and don't play one on TV.
Without recognizing the stool testing offered by EnteroLab, that article leaves a lot to be desired, but yes, the research appears credible. And yes, food protein-induced enterocolitis syndrome (FPIES) is a reasonably-accurate description of how food sensitivities relate to MC. And most doctors trust the information that is presented on Medscape, so that article should support your position.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
"The exact mechanism is not known, but it's basically an inflammation of the GI tract that is triggered by certain foods. The interesting thing is that it happens hours after ingestion, instead of being a more immediate IgE-mediated reaction," she said
If they don't believe it, they have to talk to me this morning. I went out to lunch yesterday with a bunch of friends who usually decide on which restaurant to eat at. So this time it was Greek/Turkish which should be good if you are not limited to one or two vegetables. So, I was really brave and ordered an eggplant dish. Hadn't had it in at least 2 years. What was I thinking? I wasn't. Transported by the exuberance of the moment as Ben Bernake would say about the stock market.
So, this morning I went 3 times. I am nauseated and rather sickly. I am as sunny as the weather is in Georgia right now. Meaning grey, rainy and gloomy.
And I am not dancing to the tune of Zorba the Greek either
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Thanks. Yeah, nightshades are not good for us. Never had any since dx either. No tomatoes, no eggplant...I miss it too. Hey, but I won't miss it for a long time to go now! Never tempt the devil is my lesson for today! (It is so hard to eat out. I never know what to eat, if anything).
Love it that you love the book! I already feel better!
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
So sorry you are hurting Monique. That was brave of you but hopefully this will be short-lived. I do well with tomatoes and eat them often now with no issues but eggplant I'll probably stay away from as I know I've had issues with it in the past. I've managed red potatoes back into my diet as well. I just assumed nightshades were the irritant foods and maybe could gradually add them back in. If I start having issues with my fave..the tomato...I will cry. But do miss my eggplant.
Feel better girl! And you just got over a bug right? Now this! You need a break.
Hugs!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Joan wrote:So could EnteroLab testing help FPIES parents figure out food intolerences of their children?
The "E" in "FPIES" stands for enterocolitis (which means an inflamed colon that typically results in D), so sure, the EnteroLab tests could be used to detect those sensitivities, because there will have to be antibodies in the intestines (and therefore in stool samples).
Joan wrote:Why is FPIES only kids?
Probably for the same reason that for decades doctors considered MC to be a disease of "older women" — IOW, because they haven't looked for it anywhere except in kids, and they can't find it if they don't look for it. And they don't know that anyone who has MC tends to have the same type of food sensitivities, regardless of their age.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for the good wishes. Yeah, you're right I just got over the bug -- I was only well for like 48 hours then I tried this failed experiment. I think I am going to revert back to taking my lunch to restaurants and just leaving a large tip to the waitress. I feel embarrassed not eating but embarrassment beats being sick for a few days. I don't know if there is such a thing as safe restaurant food for us. You never know what oils they use to cook things in and they are sulfites, carrageenan, gums and food coloring in everything. I don't want to stop having a social life altogether...
I do, indeed, need a break!
Hugs right back at you!
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I went out to lunch yesterday with a bunch of friends who usually decide on which restaurant to eat at. So this time it was Greek/Turkish which should be good if you are not limited to one or two vegetables. So, I was really brave and ordered an eggplant dish. Hadn't had it in at least 2 years. What was I thinking? I wasn't. Transported by the exuberance of the moment as Ben Bernake would say about the stock market.